Checklist for authors

After receiving NACC data through the data request process, use the resources below to prepare for publication and review.

  1. Be sure to include the NACC/NIA grant citation.
  2. You are required to submit your publication to NACC for review before releasing manuscripts, meeting abstracts, or any other research results.
  3. In order to comply with the NIH public access policy, all authors using NACC data must submit their work to PubMed Central (PMC).
  4. Upon publication, send NACC a final copy of your manuscript or abstract to consnacc@uw.edu.

ADC vs. ADRC

Beginning in summer 2019, the NIA Alzheimer's Disease Research Center (ADRC) program is referring to all centers as Alzheimer's Disease Research Centers (ADRCs).

The NACC database contains data from both Alzheimer's Disease Core Centers (ADCCs) and ADRCs. If referring to the NACC database, you may refer to the centers as ADCs, but if referring to the current NIA program, we recommend referring to the centers as ADRCs.

Citing the grant

In abstracts and posters, acknowledge the NACC grant number, and the ADRCs as the source of the data.

In presentations and the acknowledgments section of manuscripts, the following statement acknowledging the NACC grant and Center support is required:

The NACC database is funded by NIA/NIH Grant U24 AG072122. NACC data are contributed by the NIA-funded ADRCs: P30 AG019610 (PI Eric Reiman, MD), P30 AG013846 (PI Neil Kowall, MD), P50 AG008702 (PI Scott Small, MD), P50 AG025688 (PI Allan Levey, MD, PhD), P50 AG047266 (PI Todd Golde, MD, PhD), P30 AG010133 (PI Andrew Saykin, PsyD), P50 AG005146 (PI Marilyn Albert, PhD), P50 AG005134 (PI Bradley Hyman, MD, PhD), P50 AG016574 (PI Ronald Petersen, MD, PhD), P50 AG005138 (PI Mary Sano, PhD), P30 AG008051 (PI Thomas Wisniewski, MD), P30 AG013854 (PI Robert Vassar, PhD), P30 AG008017 (PI Jeffrey Kaye, MD), P30 AG010161 (PI David Bennett, MD), P50 AG047366 (PI Victor Henderson, MD, MS), P30 AG010129 (PI Charles DeCarli, MD), P50 AG016573 (PI Frank LaFerla, PhD), P50 AG005131 (PI James Brewer, MD, PhD), P50 AG023501 (PI Bruce Miller, MD), P30 AG035982 (PI Russell Swerdlow, MD), P30 AG028383 (PI Linda Van Eldik, PhD), P30 AG053760 (PI Henry Paulson, MD, PhD), P30 AG010124 (PI John Trojanowski, MD, PhD), P50 AG005133 (PI Oscar Lopez, MD), P50 AG005142 (PI Helena Chui, MD), P30 AG012300 (PI Roger Rosenberg, MD), P30 AG049638 (PI Suzanne Craft, PhD), P50 AG005136 (PI Thomas Grabowski, MD), P50 AG033514 (PI Sanjay Asthana, MD, FRCP), P50 AG005681 (PI John Morris, MD), P50 AG047270 (PI Stephen Strittmatter, MD, PhD).

Please do not state that “This study was supported by U24 AG072122.” (This is acceptable ONLY if NACC supported your study directly by awarding you funds through a NACC New Investigator grant.)

If you used data from the Alzheimer’s Disease Genetic Consortium (ADGC), please acknowledge that grant as well (NIA/NIH Grant U01 AG032984).

Describing NACC data

  • Please be sure to review the data-collection forms and documentation, especially the Coding Guidebooks and Data Element Dictionaries, for help in describing the NACC data in your manuscript. You may want to consult this list of references cited in the coding guidebooks for the UDS and the FTLD and LBD Modules. These are the sources for the operational definitions and diagnostic criteria used in data collection.
  • The papers by Weintraub (2009), Weintraub (2018), Beekly (2004), Beekly (2007), Besser (2018, on the Neuropathology Data Set), Besser (2018, on Version 3 of the UDS), and Morris (2006) describe NACC data in detail and will also be helpful.
  • NACC recommends that you include the phrase, “This analysis used data from X ADRCs,” consulting the NACCADC variable to determine how many ADRCs are represented in your data set. (The NACCADC number varies from one data set to another because the number of ADRCs has changed over time.)
  • NACC recommends that you describe the specific span of time that is represented by your data. This can be accomplished by using the start date of the UDS (September 2005) and the data freeze on which your analysis was based (e.g., “… for UDS visits conducted between September 2005 and May 2012”). Please note that any given data freeze contains data from the previous month and before, such that the June freeze contains data from May and before). Please refer to the email documentation that you received with your data set or contact a NACC consultant to confirm the data freeze used for your data set. If your data set includes MDS subjects, please be aware that these data were abstracted from medical records starting in 1984.
  • If your research includes the CDR, note that Washington University requires that your manuscript's initial reference to the CDR® use the following language and registered trademark symbol: "CDR® Dementia Staging Instrument." If your journal does not allow symbols, please include the full name of the instrument in your initial reference.
  • Additionally, if you are using the FTLD Module and/or the behavior, comportment, personality and language items collected on UDS Form B4, note that Washington University requires that your manuscript’s initial reference to the CDR® and NACC’s additional FTLD Module components use the following language and registered trademark symbol: "CDR® Dementia Staging Instrument plus NACC FTLD Behavior & Language Domains." After that initial use, "CDR® plus NACC FTLD" is acceptable. If your journal does not allow symbols, please include the full name of the instrument in your initial reference, and "CDR® plus NACC FTLD" in the remainder of the manuscript.
  • Please note that as determined by the University of Washington Human Subjects Division, the NACC database itself is exempt from IRB review and approval because it does not involve human subjects, as defined by federal and state regulations. However, all contributing ADRCs are required to obtain informed consent from their participants and to maintain their own separate IRB review and approval from their institution prior to submitting data to NACC.

Using appropriate methods based on the nature of NACC data

  • Please note that the NACC data are not appropriate for studying the incidence or prevalence of MCI/dementia at the population level (city, county, state, etc.) because of the varying sampling strategies at each Center.
  • If conducting survival analysis using NACC data, beware of common violations of model assumptions. For example, if a subject has become too impaired to continue follow-up, the reason for censoring may be closely related to the outcome. Please contact a NACC consultant with any questions about time-to-event analyses.
  • NACC data are not ideally suited to study risk factors for dementia because of varying methods of subject recruitment across Centers and because of largely incomplete exposure histories.
  • NACC consultants are happy to speak further with researchers about appropriate methodology. Please contact us at consnacc@uw.edu.

Ensuring proper submission to PubMed Central (PMC)

If you’re unable to find what you’re looking for, please don’t hesitate to contact us.

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NACC is funded by the National Institute on Aging (U24 AG072122) and located in the Department of Epidemiology at the University of Washington School of Public Health, Walter A. Kukull, Ph.D., Director. © 2021 University of Washington